4. Discussion
This is the first study to qualitatively investigate the challenges with and information and mental health service needs of children with CF from varying perspectives. The four themes and their associated subthemes provide us with critical insights and knowledge to address their mental health service needs. Children with CF experience a variety challenges associated with their condition (e,g., worries about health, disease outcomes, hospital procedures), challenges consistent with previous literature 19-20. Social challenges based on their differing expectations and responsibilities compared to their healthy peers were also highlighted 21. Connecting with other children and adolescents with CF was emphasized as an important way to normalize and validate these experiences. Including ways to cope with the uncertainty of the future, as well as providing social support through shared stories of peers with CF is critical when considering the development of mental health programs for this population.
The importance of children with CF learning about their CF and how to manage it independently was prominent in our results. Previous literature has similarly demonstrated that appropriate education can help facilitate effective management and coping with CF, promoting treatment adherence and overall well-being 22-23. An important step to relieve anxiety and improve disease management may be through providing CF-related education to children with CF. Opinions concerning disclosing information about life expectancy and disease prognosis to children differed between parent and HCP participants. Limited research has focused on how and when individuals with CF should receive information about their prognosis 23-24. One study demonstrated that patients desire early, individualized communication about prognosis and that age-appropriate educational materials could aid in initiating these conversations among families and HCPs 25. Deciding what information about disease prognosis related to CF should be presented and how to present that information are important considerations when considering the development of an Internet-delivered mental health program for children with CF.
Results outlined the ways children with CF cope with their illness. Strategies included focusing on positive aspects of their life and remaining hopeful in their ability to access effective treatments. These strategies are consistent with previous research that has emphasized the importance of optimism and acceptance in coping with CF25. Strategies to promote positive coping were highlighted as well (e.g., discussions with parents about emotions associated with CF; parental modelling of helpful coping skills). Moreover, child participants noted that it is helpful to know there are other people with CF that have shared experiences. Research across various chronic illness populations have demonstrated that greater levels of social support from friends and family, or others with an ability to understand one’s experience, has been associated with greater adherence to treatments and better quality of life26-27. Emotional support from friends and family, as well interactions with other youth with CF, has been recommended to promote feelings of connectedness and positive coping21.
Directions for mental health care services for children with CF were discussed. Preventative mental health care was recommended to prepare children to cope effectively with potential challenges they may face in the future. Participants offered specific feedback about the development of an Internet-delivered mental health program for children with CF. Developing and implementing a flexible, stepped-care approach to care where children with CF would receive a mental health prevention program followed by further intervention for children with more acute needs may be beneficial.
The current study offers valuable insights into the challenges of children with CF and their families, as well as the information and services they need, and their views on receiving and Internet-delivered mental health program. A primary strength of the current study is the inclusion of three different perspectives (i.e., children with CF, parents, and HCPs). By including these different perspectives, a more complete understanding of the experiences of children with CF was achieved. Several studies have excluded children under the age of 12 years. By including younger aged children in the present study allowed the experiences of this age group to be represented.
There are limitations to consider. First, as the study included the participation of young children, building rapport was essential prior to interviews to ensure children felt comfortable sharing information about their experiences living with CF. As the time to build rapport was often short, children may not have shared in-depth details of their experiences. Additionally, based on their age and developmental understanding of their condition, children may not have possessed further information or insights to share. Second, all of the participants were residents of one province in Canada, and their experiences, particularly related to the health care system and availability of services within CF clinics, may not generalize to other provinces within Canada or beyond.